I Feel That My Kid Might Have Autism- NOW WHAT?!

Your gut is telling you that something is different with your child. You kinda know what it might be, but you’re nervous to say it out loud. You do some quiet internet searches on “signs of autism” and it hits you that these sites are describing your child. 

I’m here to say that I know exactly how you feel! I just want to take your hand and walk you through the first stages of figuring out this ‘thing’ in your family. This post is my answer to “I think we’re going to get my child assessed, but what do I DO?”

To get started, I want to throw out my definition of the important concept called early intervention. This is when you, as soon as you possibly can, step in to change your child’s natural course of development. If you can see that something is ‘off’ in your child, the earlier you can stop, start or change behaviors, the more success you will have in giving your child a better chance in life. Below we will discuss some methods to look into to teach your child typical behaviors while his or her brain is still developing.

Believe me, I know the frustrations of  w a i t i n g  for something to happen with getting a diagnosis, setting up appointments, and figuring out a therapy game plan (not to mention jumping through hoops with health insurance!). It feels frantic to get the earliest intervention possible, but then you’re stuck waiting for something to happen! Don’t believe me? Check out our drawn out timeline in my final diagnosis post. 

Here are my tips for your first moves once you’ve decided to have your child assessed for autism:

Make a List

Sit down, think about your child, take a deep breath and begin writing down all of the concerns you have about him or her. Come up with specific examples of behaviors, reactions, and situations to share with the professionals.

It is really, really strange to try to come up with a list all of your kid’s weaknesses. But you’re going to be trying to “prove” to others that he or she needs to be evaluated. I guarantee you that your mind will draw a blank when you’re put on the spot.

Pick up the Phone!

Just do it! It’s time! Start the waiting game for appointments and paperwork now!

• Call any one you know in the area that has a child with autism. Rack their brain for any resources they can share with you. Most likely this person will become a support to you, which is what you need at this time!
• Do an internet search for early childhood assessments in your county and call them! (Hint: where I am in Utah County, the first places I would call are Kids on the Move and Utah Parent Center. Another helpful resource is Autism Council of Utah)
• Call the school district and ask about early childhood assessments
• Call your pediatrician and make an appointment for a developmental assessment, get referrals to a developmental psychologist, but…
• Call your insurance to find out if it covers developmental assessments, or at least say the word autism and see if they can tell you what might be covered regarding it
• Maybe try calling a local college or university to see if they know about resources or assessments (Utah Valley University is a great resource in my area) 
• For a complete list of who I called, check out my first steps to our diagnosis post
• I know many have feelings to the contrary, but I would highly recommend telling a friend or loved one of your concerns. This will give you the beginnings of a support system, as well as more eyes and ears to help you look for resources

Research, Research, Research!

Begin an internet and/or book search about autism. Now, I know from experience that it is a rabbit hole that can be very disheartening, overwhelming and confusing. Please, just keep your chin up and realize you are at the tip of an iceberg and you have no idea the path (different, but also amazing!) that is ahead of you. 

I would recommend that you start with Autism Speaks, which is an official site with both technical, scholarly articles, as well as thoughts and tips from parents in the trenches. On that site you can get the 100 Day Kit, which gives you tips for how to get started in the Autism Spectrum Disorder world. (When I got it, it was just free to download. Now it looks like you have to meet some guidelines to get it for free, so try it out and I hope they’ll be easy to work with!)

I’m sure we’re all aware that there is also a lot of mis-information out there on autism. While you’re soaking in all the theories and writings on it, make sure you consider the source, think about it, look for second opinions and credible research, and so on. You’ll figure out what seems right to you.

Yes, Do Go Off on Research Tangents

As you research, you might see that there are other disorders that go hand in hand with autism, namely sensory issues. You might want to start looking up Sensory Processing Disorder. I tell you this not to overwhelm you, but to give you a clue about what you can do NOW, TODAY to HELP your child. (And if it helps them, it helps YOU!) If your child’s sensory needs are not being met, you will continue to have a distant relationship and behavioral problems with them. 

Here is just one example of a blog post that I found that tackles something called a Sensory Diet. A lot of “behavioral” problems, including eating and sleeping, are actually SENSORY issues that you can work on by accommodating them! When Jack is escalating into angry behaviors, I have him do a lot of jumping, swinging, pushing and stomping. I also squeeze his muscles a lot, as explained in this post about touch. It is calming, helps him re-focus, and can take some of the edge off of his frustrations. One popular book, called The Out-of-Sync Child Has Fun, is full of activity ideas for kids with sensory needs.

Another good tangent to research is therapy, namely Occupational, and Behavioral, and Speech Therapy. We have done all and highly recommend. There is a form of behavioral therapy called Applied Behavioral Analysis (ABA) that you will want to become familiar with to see if it would be helpful for your child. You can read about how we found Occupational Therapy here and our Behavioral Therapy experience here. Our speech experience was kinda short lived, but Jack has had a lot of speech therapy at school.

Find Your People

Ahhh, the internet. What a great place to find a community. Being a special needs parent means you might feel isolated, so something like a Facebook group can be heaven sent. Find a group that’s specific to your area, introduce yourself and ask questions! The groups I am a part of are so helpful, respectful and understanding.

Blogs and Pinterest can be your go-to as you research to find answers and others’ thoughts. I love that these sites are generally parents or teachers who are in the trenches with these kids. Check out the Pinterest board I’m building to give me ideas to help Jack!

Play to Your Child’s Strengths

What is your child good at? Or at least, what is he/she obsessed with? Can you start there to try to connect with them? In our early days, Jack was 100% into reciting movies, AKA he was exhibiting echolalia (there’s another research word for ya!). Once I started to join in the reciting, I started to get somewhere with him!

If your child plays with toys in a strange way, sit down and play his way! You might just get a glimpse into his brain! There’s even a therapy term for this called Floortime you can check out.

I’m guessing your child is probably obsessed with some sort of screen. Sit and watch them play and use that as a conversation starter to get them talking/communicating in their own way.

Lastly, Let Yourself Feel All the Feelings

It is often said that when someone discovers special needs in their child, there is a period of grieving. Grief for the loss of what could have been, for the future you imagined for him or her. Don’t dismiss those feelings. It is a loss and a change of course.

And when you are ready and need a pick-me-up, I would encourage you to read my post about the Up-side of Autism. Life with a child with autism will be different. But it can be good. Even great. Jack has certainly opened my eyes, my mind, and most definitely my heart. We’ve got a rhythm down and I feel like I can read him pretty well (for the time being…)

And I hope that this can happen for you too. Good luck! You can do this! Your child needs you, and believe it or not, you need your child too.

>> Feel free to share your ideas, thoughts, good resources, etc in the comments! <<